There are times in people’s lives when they hit the abyss. When things look so incredibly bleak and you feel that you will never dig yourself out. Last year I faced the abyss and Lanette, with her kindness and love and infectious spirit helped drag me out of the abyss, here is my story.
Flo “GBM SURVIVOR” is a Brain Buddie who jumped right in to help and give back. She is one of my biggest fans. Flo is not shy about telling anyone and everyone about Gray Matters. I met her at the local AZ support group I facilitate. Flo is a giving soul and was eager to give back and help others. She felt she was beating something meant to beat her, and it will not win! She is 8 years out with GBM 4. After receiving a few cards and goodies from Gray Matters it was clear she wanted to do the same & became one of our official volunteer. Flo writes: “My Army military service was both active duty and reserves from 1971 to 1998 for 27 years of duty. At work one day at BC/BS (medical health coverage) on a Monday I had a bad headache and saw my neurologist and on Wednesday I still had a severe headache and he told me to go to ER. Arriving about 9:00 AM (Phoenix Baptist Hospital), a diagnosis of a brain tumor was confirmed by CT/MRI, by 3:00PM with next day surgery set for 9:00PM. All within 30 hours I had surgery on October 2009. 5-days later the lab confirmed glioblastoma multiform Stage 4. As of October 2014, I have been a 5 year survivor. Participating in Gray Matters Foundation has been and shall always be a blessing to all.”
Flo has been an amazing supporter and Brain Buddie. She has made Gray Matters over 500 cards, and mails them out. She has donated time taking photos for events we participate in and she has committed to keep scrap books for all to see and learn about the foundation.
An example of what an amazing Buddie Flo is: I just received a package of cards and a book of stamps from a friend Flo met at an appointment at St Joe’s. The lady wrote me a personal note, and sent me 20 cards and stamps to cover the cost to mail them. She thanked me for what I do because Flo shared such nice things. Flo is doing exactly what our tag line “IF ONLY FOR ONE” IS ALL ABOUT!
She has rallied her husband Paul (or “what’s his face”, as he likes to call himself) to get involved as well. We are so fortunate that they are able to contribute in so many ways to Gray Matters Foundation. Way to go Flo you are our ONE! You are one OUTSTANDING BUDDIE!
For more information about how you can become a Brain Buddie, please visit http://www.graymattersfoundation.com/brain-buddies/. For information on how you can contribute to Gray Matters Foundation, please visit http://www.graymattersfoundation.com/contact-us/.
Posted in Blog, Buddie Stories
Tagged #LTT, brain buddies, brain tumor awareness, brain tumors, braintumorsstink, BTAM, gbm, giving, glioblastoma, gmfbrainbuddies, gray in may, gray matters, Gray Matters Foundation, if only for one, Memory making moments, military, pay it forward, retired military, stories, tumorversary
I haven’t shared my IF ONLY FOR ONE’s in awhile and two days in a row BAM! This story took Place Thursday May 7th 2015. I have to start with a little foreshadowing. I was getting ready for the day and I decided to wear a new top I purchased a few weeks ago. It is made of thin tshirt like material so poking sticking a pin through it would surely leave an obivous the next time I wear it. Out of habit I went to stick my lapel GRAY RIBBON and paused thinking well its a new shirt and hmmm what else could I wear for my gray today, my bracelet but you can’t see the ribbon . STOP! I said “SELF” its a shirt not a BRAIN TUMOR. It’s a tiny hole in a t-shirt replaceable not a massive slice in my head. No second guessing now and WHALA I put the ribbon in my shirt. ( seems trivial but stick with me)
Now to take on my day. I ran a bunch of errands and on my way home I stopped at a FEDX print store so I could make some copies of the GRAY MATTERS FOUNDATION poster “Wear your Gray in May” . I have my flash drive in hand and ask for help. A nice man named Bill walks me over to self serve and this is where it happened. We chatted for a bit with small talk. He has a PA accent. My husband is from PA so that opened the door for conversation. I ask what brought him to AZ and that is all it took. Next he walks me through the steps to get the file opened and on the screen. Once the first copy was made the BT conversation happens. I ask did he know it was BRAIN TUMOR AWARENESS month. NO. He reads the poster and it opened the door for even more questions. I share how I started this foundation and what I do and my passion for the cause because having experienced it first hand I KNOW! what it feels like to need that encouragement and support. Then it happens ……He gives me that look and Asks YOU???? Yes me I reply. He went on to say how lucky, blessed I am. And then the look that breaks my heart. That tone I have come to know way to often, that moment when I sense he knows more about brain tumors than he cared to EVER! He gives a BIG SIGH Really? and with the heart broken look went on to share because—-”my brother in law was diagnosed and died in less than a year” Before another word was said those horrible three letters entered our conversation. GBM ( in my mind DANG IT! ) I am so sorry Bill. He shared how tough it was to watch but how wonderful his sister in law handled it. We chatted a little bit more and I shared more about the special details of May and wearing gray. Oh my goodness it occurred to me Bill is my one today. I shared my business card with Bill and apologized I didn’t have a brochure but please keep take a poster. I offered for him to give his sister the card. I shared if she was open to it I would be happy to reach out to her . WAIT I was thinking & It hit me. I am wearing my special ribbon the one that is going to leave a small reminder . I only have one of these ribbons but that’s ok they need it. Today he & his sister are my ” if only for one”. I proceed to remove my GRAY RIBBON so I can gift it. I asked Bill ” would your sister wear a ribbon if she had one?” OF COURSE. Well give this to her. It’s a special ribbon because it has a little angel on it and it represents those who fought a good fight. I always tell my buddies I am a voice for those who no longer have one. She can wear this and be reminded he is not forgotten and someone is a voice for him in this cause. He will not be forgotten EVER. Bill said he just couldn’t take the ribbon. I shared with Bill I knew this was for his family because I almost didn’t wear it today and now he shares his story. It for sure is meant to be his sisters ribbon. You and your family are “my one” and I was supposed to give this ribbon to you. You just never know the reasons but follow those little nudges.
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Tagged brain buddies, brain tumor, brain tumor awareness, fedx, glioblastoma, gray in may, Gray Matters Foundation, grey matters foundation, If Only, lanette kirk-veres, Memory making moments
my appointed SUNSHINE
This story took place June 23rd 2015 the fourth Tuesday of the month. For those who have followed any portion of my journey you know that I have donated my time facilitating a local BRAIN TUMOR SUPPORT GROUP for over 10 years and that the 4th Tuesday is dedicated to this group. I typically schedule nothing all day and I get to the hospital rested and early to meet and greet the families both new and those who have attended for years. I like to be my authentic self. I want to be completely and whole heartedly in the moment so rested is best. Today was no different except for one little change. I have been trying to schedule a brief follow up appointment with a Corporate Brain Buddie and today they could meet me briefly before the group at the hospital. So I stepped out of my normal and scheduled a short meeting before I picked up the parking stickers etc. I had it all planned so I thought. An important piece to this story is each time I drive in town for group I always say a little prayer and ask that all who are supposed to be at group arrive safely. I ask that I have ears to hear those who need to be heard and eyes to see those that need to be seen. I ask to help me be all I was created to be. I want to be a good leader. I know without a doubt I was meant to help the hurting , the sick and yes sometimes dying. I was meant to encourage and share hope. For me I feel without prayer I would not be me. Well I got to the hospital and I text the person I was supposed to meet letting them know that I had arrived. The reply was “I have to cancel” AGAIN. Of course I had 2 choices get upset or live in the moment and be still. I choose the second. So I was quiet and figured well I am early and not in the heat , and not rushing decide to relax before my next stop. As I sat I people watched and then this one couple stood out. I saw this lady and man exiting the doctors office. The wife pushed the hubby in his chair to the side and she walked down the hall and came up and back a couple times. I asked if I could help her find something she said ”actually I am looking for water and there is a fountain but no cups.” Me- hold on I think they might have some in the Dr’s office. I went in the office and sure enough they did. I went one step further and filled it with water from a machine. I walked out and gave it to them. The man who I now know and call Mr. Bernie asked me my name ? ( HE OPENED THE DOOR for conversation and this is where it began,) He said I looked familiar. I asked if he had a brain tumor he said no but began to tell me why he was at the hospital and then our eyes met. He then asked what I do and I told him how I have survived BC and he said I was a true miracle. He told me how he is a retired Chaplain and some of his story about he and his wife. I told him I trained to be a volunteer chaplain after my first surgery and shared some of those stories and maybe that was our connection. His wife just couldn’t believe the connections and sat back and smiled. He looked up and said ” I was a Chaplain for many years in hospitals” Communication is vital and YOU HAVE THE GIFT, me- what do you mean? you know how to do it , You know how to communicate with those who need support , care. Your a good communicator. I scooted down so I could look at him and not over and he asked me Do you know the song “YOU ARE MY SUNSHINE” Me- Oh my goodness do I??? I told him he was going to make me cry I call my son that and my daughter my daughter shine. More importantly I just gave my son a wooden plaque for his birthday a few days ago he turned 26. The plaque said exactly that ” YOU ARE MY SUNSHINE” I shared how I wrote no matter how old you are you will always be my sunshine. Mr. Bernie said that he could tell I was SUNSHINE to those I meet . He asked if I knew the words? I said I believe I do. He said sing it with me. He looked at me and then his wife and with a big smile in the middle of the hospital tears flowing down my face I sang YOU ARE MY SUNSHINE with him. Here is the what I call the “GOD wink” I could have let the appointment that didn’t happen cause frustration and I would have left. I choose to be still. I choose to be in the moment not caught in disappointment , and in that moment I realized I never got stood up I was actually at my destined appointment. On that car ride in to my meeting I prayed and believed I would help all those I was supposed to. Well I DID! and in the process I was blessed before my group even started. Now here is the part that makes the smile even bigger. I chatted with them and walked them to the door to meet their ride. Mr. Bernie shared his father worked with Mr. Jimmie Davis who wrote the song YOU ARE MY SUNSHINE. Mr. Bernie’s father actually helped write the tune for the song. Mr. Bernie is due back for more surgery soon. I gave his wife my card and told them to call me so I could be his sunshine! I will decorate his room and the only gray that will be in there will be GRAY MATTERS! If we are still and in the moment we may just receive the sunshine we need. Today Mr. Bernie was my #ifonlyforone he was my #sunshine
Kris is her name and Tom was her husband. I never met Tom in person but I did through Kris. You see a loved one can always be kept alive in memory if you share their story. Kris shared his story and Tom is part of the journey. Caregiver journeys are part of the awareness we need to share. Go with me as I share about my dear Kris. I was new to the annual Florida Brain Tumor Association conferences and learned quick their was a group who had formed a bond and started a traditional meet up to see one another. I was learning who was who and FAST. I smile as I type because I can compare this to the phrase its like HIGH SCHOOL but in the brain tumor group. Finding out who the cool kids were was great. This was awesome because they were fun but encouraging and loved life in the midst of such heartache. I had no idea attending the FBTA events would be a life changer. I can say without hesitation My life is forever changed because of my brain buddies in Florida. Kris, she is a caregiver. Oh yes she cared for her Tom and how she loves him so. Tom had a brain tumor and it was the GBM we all hate. I met her after her Thomas pysically died but she has kept his life lived and memory very much alive. He was more than that tumor. She has been his voice and teaches others to do the same. I remember when we became friends It was like yesterday. My first time meeting her was Jan. 2001. I know this because My hubby and I attended the conference after getting married a few days earlier. It wouldn’t be until years of attending FBTA and the get togethers in between that I would learn how I was given a living angel to see me through this journey with Brain Tumors. I am not the only one who feels this way just ask those who know her.
Year number one everyone was kind and welcoming. HA! the next year was my initiation. Oh we can’t forget our trip to WASHINGTON DC Go Gray in May. She led the way and BOOM she made some things move. Back to Year 2 aka my “initiation” conference. The big joke on me was Kris and the crew let me call our good friend Murray MURPHY the whole weekend they say that was my initiation. We still laugh about that today. I remember the day I was introduced to Thomas. We were at an after dinner party only a few were invited so it was a pretty tight group. I noticed Kris was sitting off to the side clinging to this frame. I had seen her caring it around and then she asked. Do you want to see my Tom. Of course I replied. I can still see her face, her tears but the joy of holding him. It was just a photo but it was her husband. There is something about telling the story of someone you love. There is even more passion behind the voice when they were taken to soon. Kris was this person. She was part of a cause that was powered by LOVE but she was determined to never let the thief win and trap her from life. Kris is powerful in business. Kris is an amazing mom , wife and friend. Kris is one of the few who became part of a cause and never walked away. Death couldn’t make her run. Death caused her to become more devoted and a reason to never loose voice. Kris is my friend. She believes the best can happen. She has held and loved the best and was left with it stolen. The beauty of the brain buddie world is we love. To know Kris is to love Kris. If you are her friend then you are loved. Kris taught me that when we unite as a group we can lift. We have learned only a few understand but brain tumor families are a different family. Once your in well only you can choose to walk away but most find a spot and hang on. Caregivers move mountains. I could write a book instead of a blog but Kris knows how I feel. We have lost so many of those we love. We have cried together, and Oh how we have laughed. We never forget! We will just grow older together and always reminisce. FRIENDS NEVER EVER END!
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Tagged brain buddies, brain tumor awareness, FBTA, friendsneverend, gbm, glioblastoma, gray in may, gray matters, Gray Matters Foundation, if only for one, lanette kirk-veres, Memory making moments, sharehope, support
Today I want you to know about my friend Matthew Fullerton. He will celebrate 30 years surviving GBM. I think His tells his survival story best here is that link https://virtualtrials.com/survivematt.cfm I met Matthew at an event in 2000 but would not really become friends until attending the Florida Brain Tumor conferences EVERY YEAR from 2001 on. Matthew is the true definition of MEMORYMAKER . Matt took photo’s at all our events and if you didn’t realize it you would when you got to see his masterpieces aka his SCRAP BOOKS. He took the photos and created true memorymakingmoments that I would learn very quickly would have to last a lifetime. It was so awesome because he would create online photo books and would bring the hard copy photo albums at the next event for all of us to see. It was the best. Some people ask “Isn’t it sad to look at those books and see so many gone?” I say NOPE! just the opposite What a blessing to have those books to remember LIFE LIVED the good times. Matt always makes you laugh and listens when you need to cry but don’t be fooled he will tell you like it is ( ask any of those who spend a little time with him ). Watch out ! Mess with those he cares about , specifically his brain buddies and your TOAST!!!! I wanted you to know about Matt because in the midst of what could have taken him down he has used it to encourage many all over the world. To know Matthew is to love Matthew. I am so glad to call him my friend. & he says it best KEEP ON KEEPING ON
Posted in Blog
Tagged #LTT, bestieboybrainbuddie, brain buddies, brain cancer awareness, braintumorsstink, BTAM, gbm, GBMSURVIVOR, glioblastoma, gmfbrainbuddie, gmfbrainbuddies, gray matters, Gray Matters Foundation, IFONLYFORONE, Memory making moments
Today we want to tell you about Steve Westerhoff. Steve is a 30 year survivor of Medulloblastoma. He was diagnosed in 1987 with a pediatric brain tumor while attending college. He explains that being told he had a brain tumor caused some life changes. Steve endured surgery and radiation down his spine. He and his family were given terrible statistics and on with life he went. He clearly beat the odds. Steve is a huge part of why the Local support group is here today. He works at the hospital and while working would cross paths of those on the same journey and invite them to participate in group. In the early days of the group when it was not funded by donors Steve organized the monthly potluck so attendees would have snacks and drinks. Steve didn’t stop there. He was very involved in different events in the valley involving BRAIN TUMOR AWARENESS. The tumor he was diagnosed with was typically a pediatric brain tumor so he was very passionate about helping peds and was involved for many years with the Local Pediatric Ride For Kids events. He was asked to speak at several of the events. If you have ever met Steve then you know he has a heart of gold. He encourages all those he meets. Steve has helped with GRAY MATTERS FOUNDATION on numerous occasions making sure others know we are here to support and encourage the families on their BT journey. He wears his turtle shirt with PRIDE and tells the world what he thinks Brain Tumors Stink. We can always count on him to help with #BTAM events. We appreciate Steve and with Brain Buddies like himmore families will feel cared for and supported. Thank you STEVE for all you do.
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Tagged barrowneurologicalinstitute, brain buddies, brain tumor awareness, braintumorsstink, Braintumorsupport, BTAM, gmfbrainbuddies, Gray Matters Foundation, If Only, if only for one, IFONLYFORONE, medulloblastoma, SteveWesterhoff, support, survivor, tumorversary
Today is about My friend, my Brain buddie, Sheryl Shetsky AKA BT DIVA. She is a survivor of almost 30 years diagnosed with a CEREBELLUM BRAINSTEMGLIOMA in 1989. She tells her story best so here is her link and it is a must read. http://www.floridabraintumor.com/about.htm Our friendship began when my husband and I attended our first FBTA conference on our honeymoon weekend in January 2001. The FBTA event was exactly what we needed. The weekend was filled with breakout sessions loaded with great information and time to connect with others. We were so excited to learn we weren’t alone. It sounds crazy but this event taught us about this stuff called SUPPORT. We had no idea it was out there. I can remember my main take away listed in DIVA’s TOP TEN http://www.floridabraintumor.com/topten.htm my fave is BE PROACTIVE NOT REACTIVE. The association is more than connecting others, they have and continue to raise money for research. Diva has made a huge impact in the BT world. She has built coutless relationships in the community , medical , pharmecutical and much more. Sheryl get’s things done. Take a read FBTA donated 500, 000 to Pedicatric research the deets: UofF.htm I’m sure it seems I have painted a perfect picture but that is not the case. Hard work determination Sheryl has overcome ALOT! She presses on and makes that tumor pay its dues. Sheryl has taken a journey that for many is nothing but horrific. Diva has added connection and hope to a cause. Oh she knows plenty of heartache but is determined to to fund and find a cure. Our friendship: Sheryl is a true friend. It was her guidance and suggestions that have helped me succeed in starting Gray Matters Foundation. Attending her events opened the door for me to help so many that needed that personal encouragement and support. When I helped david m bailey with his cancer tours I became even closer friends with Diva. He performed annually at her events which meant I worked closely with her to make sure the performance details were successful. Through the years our friendship has only become stronger. We believe that strength is found in TRUST! , teamwork & collaboration. She believed in what I did and after I set up GMF non profit status she was one of the first in the BT community to offer us a booth so we could share what we do. Sheryl and I try to attend an event each year together so we can stay connected and current in the bt community. Fbta continues to be successful because of the foundation and leadership Sheryl has created. I am greatful to all Diva has given and continues to give. Please take the time to visit their website link above and like their FB https://www.facebook.com/floridabraintumor/?fref=ts
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Tagged brain buddies, brain tumor awareness, BRAINSTEMGLIOMA, braintumorsstink, BTAM, BTDIVA, CEREBELLUM, FBTA, FLORIDABRAINTUMORASSOCIATION, gray, gray in may, gray matters, Gray Matters Foundation, if only for one, lanette'slittlebits, Memory making moments
Banking Bagels and now Brain tumors. Gene Snyder was my client, my friend and now a brain buddie. I met Gene when I worked at a bank. We laugh now but it was not funny back then. His very stern voice scared me. Really the truth he wanted you to know he meant what he said and said what he meant. He said it with conviction so you listened ! He was a business owner and if we wanted his banking relationship he made it clear NO FEES on the business account or “byyye byyyyye”. I didn’t know it then but as time went on I learned Gene was a big teddy bear. I remember it like yesterday. Well the story goes we made Mr. Snyder happy and we did get his banking business. I worked at the branch he considered his main location for over a year. I was promoted and moved around to different bank branches so at that point I didn’t see him so much unless I stopped by his business the deli “Generations” at 7th street and Missouri. Funny thing I was still his banker who received that occasional call when Gene expierenced an upset and I would do my best to help make it right. Gene was my client and a friend. It was when I was diagnosed with the brain tumor It proved even more so how every goodness was based on friendship and was the foundation of the the Snyder family. I remember calling some of my clients to let them know I would be out on medical leave. Gene and his son Scott were top on my list. It would not be until after my surgery I would learn of the beautiful act of kindness, their generocity and love they shared with my family. You see I was in surgery and they delivered bagels and snacks so my family did not have to leave the hospital. To have a client bless me , my family, TOTAL GIFT from God! Gene made me promise to stop by occasionally. Of course honoring Gene’s request I kept them up to date with my health each time I had another surgery or treatment. I never dreamed I wouldn’t go back to work, I never imagined being told I had Brain Cancer for that matter. Gene would call periodically when one of his customers was diagnosed and asked if I could speak with them or if I could encourage them and of course I did. Through the years he sent clients and their familes that needed support my way. He believed in what I did and how I turned my situation around and to help others. Gene was just that type of guy. He cared about everyone, he GENUINELY cared. It wasn’t until I got that call from Scott his son that our connection became even more clear. Scott called and was not himself in fact pretty upset. I could barley make out what he said. When I did hear I was devastated just like it was my own family. Not GENE! such a good man. ( PROOF Brain Tumors DON’T DISCRIMINATE) The story evolves but I was able to give back. Who would have ever dreamed I would be sitting with the Snyder family in the very waiting room they delivered food to. Only this time I was sharing support with his family. GENERATIONS of The Snyder friends and family. I could write pages about how the family has become a second family but the fact remains you just never know what part of your journey is the building blocks for the next. This world is not the same without him. He will forever be deeply missed and NEVER EVER FORGOTTEN.
Bagels Banking now Brain Tumors SERIOUSLY? It doesn’t make sense but I am just glad I was given the gift to know him. Today my story was about my friend Gene Snyder. A man who was Genuine!
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Tagged AZDELI, bagels, brain buddies, braintumorsstink, BTAM, Gene snyder, generations, glioblastoma, gmfbrainbuddies, if only for one, Memory making moments, NewYorkDeli, tonguesattumors
Sunday 11-27-16 My friend took me to a christmas performance downtown and We decided to have some lunch before heading home. We tossed around a few places and she suggested Sauce. I immediately thought of the location that used to be my office and was now converted to the restaurant. There is a BOFA branch and next to it was their sales office it was bought and made into a restaurant SAUCE. ( weird but true) I assumed it was the same location but asked her where I should go. In deed it was the same location Camelback and Central. I shared with her how the building was where I used to work. I haven’t been in there for years but it was where I GOT THE CALL. For those that don’t know I learned of my brain tumor over the phone while sitting at my desk in AUGUST of 1998. The doctor who was given the task of following up to an MRI I had that morning decided to tell me on the phone instead of asking me to come in. It’s all good because his horrible bedside manor has made for a good story and how a person shouldn’t be. We tossed around a few other ideas but I knew I was ready to face “THE BUILDING”. I must admit I have driven by even stopped and taken a picture over the years. Yep even shed a tear. My life is good but it drastically changed that day. Don’t get me wrong I know my outcome to brain surgeries could have been horrible and I thank God for the blessings but it was a loss. My life with my kids changed, my finances changed, so much changes when your diagnosed. Hearing the words you have a brain tumor was the start to what would change my life forever and now 18 years later “LOOK AT ME NOW”. So we arrive. My friend will read this and will learn for the first time how truly emotional dinner was the other day. It was bitter sweet walking in that building. Silly me years ago I truly thought brain tumor? Let’s get this thing out so I can get back to work. WOW never did I dream I would be told I had brain cancer. I was not able to return having a total of 5 surgeries as many of you know and it returning near my brain stem causing it to no longer be operable leaving me with chemo and radiation as my only form of treatment. I only returned to that building to pick up my belongings and maybe once or twice that first year but never the same. I had to medically retire and it crushed me. I truly loved what I did. I was good at it to. The building is connected to a regular branch and over the years sold to a real estate company and now a restaurant . Funny thing actually going in was surreal. Memories flooded my mind. It was great though it was not so busy so I was able share with my friend my stories. I of course at this point engaged the staff in my story and where things were located and where I actually sat. Another person in the office was diagnosed with a brain tumor shortly after me and two others died from a form of cancer in the years to come so sorta weird remembering the days before illness. Processing the wheres and whats and memories I choose to remember the ones that made me smile. Those that read this and worked with me will remember the time uncle Bob’s cap came off his tooth and he sounded live ALVIN of f the chipmunks All I want for CHRITHMUS is my two front Teeth. LOL Anyhow here is what I call my IFONLYFORONE. There was a Sauce employee that came up to me after being moved by hearing my story/ TESTIMONY and asked if she could pray with me. I said of course. She was a young girl very sweet . I asked where she attended church. She explained she just became a Christian and just started attending a church not to far down the street. She shared with me the name Oh my goodness it was the very location we attended back when I was diagnosed. It was the church I attended as a little girl with my grandma. It is a different Church Name now but same building. I shared with her how it was my church family that surrounded me with love and prayers and how I was able to get through like I did. As I finished my meal I reflected on how my work family still remains a big part of my journey. Through the years they supported me. Some with lot’s of encouragement at just the right times. Funny thing several of my BIGGEST supporters for the foundation are friends I worked with in that very building. LOOKING BACK was a good day. Things have changed and years ago I felt I lost when I left but I really took what I gained and grew. Sometimes we have to see where we were. Really visualize- SEE the place, feel the emotion to know it’s ok and I did the best I could with something that could have been so horrible. You don’t have to be physically damaged to be trapped. Emotional trapping is just as harmful. I have come along way. Dear brain buddies I KNOW! braintumorsstink but it was the journey that taught me its about supportnotstatistics! Looking back gave me a better view for my future. It was that spot in this building that allowed me to be what I am in the brain tumor world today. Looking back never felt so good.
Where I got the call "you have a mass and need surgery"
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Tagged #LTT, brain buddies, brain tumor, braintumorsstink, creating memories, gmfbrainbuddies, Gray Matters Foundation, if only for one, lanette kirk-veres, LOOKINGBACK, Memory making moments, SAUCE, support, thankful, tumorversary
18 yrs ago tonight I would await my first brain surgery to take place bright and early in the morning. Micheal and I stayed at Hilton Suites near the hospital to make sure we were set for success in the morning. That evening I sat writing notes & cards for all my friends & family that I knew would be at my surgery waiting. I remembered what it was like waiting for my grandma just six years earlier when she had to have her brain tumor removed. I thought I would help pass the time and share peace with my family during their wait. I had it all under control RIGHT? Well I didn’t know it then but I was paving the way to what now is Gray Matters Foundation “creating” smiles , sharing kindness, hope , peace, love in what normally when you hear you have a brain tumor is a TERRIFYING & PARALYZING situation. I wrote letters for each hour so they would be read as a group and notes for each loved one privately. As time has passed I have tried to use every step of my journey to help those who have also had to endure the brain tumor walk. Not what I would have choosen but now I wouldn’t change a thing. Today I believe I’m doing what God has called me to do and I am greatful every day I am given to make a difference. I am looking forward to many more years “A HEAD”. What tomo brings I am not sure but I will give each day my all …If only for one I am fulfilling my call. If you have taken the time to read this I know it means you have had an impact on my life and I thank you for celebrating each day that has made my 18 years blessed. Here is to many more Lot’s of Love, your brain buddie, Lanette
Today is a bitter sweet TONGUESATTUMORS TUESDAY it marks 24yrs since I watched
my grandma’s death by a brain tumor. It would be her passing from such a horrific disease that would spark my passion to be a voice for the BT cause. The bigger piece to this moment in time would be- 24 years ago today was the seed that started the growth to THE GRAY MATTERS FOUNDATION : I would later help those in their journey with brain tumors both with “Life and dealing with DEATH” ( the photo is My uncle G and my Dad who say not a day goes by that they don’t think of their momma ” Iris W Kirk ” BRAIN TUMORS STINK THATS WHAT THEY THINK! She is forever missed never forgotten)
I first want to thank all of my brain buddies & family who helped me celebrate my birthday and once again created a month filled with memory making moments that will last a life time. Thank you to all of my Face Book Buddies who throughout the month sent me some very kind wishes. I started my birthday with a trip to Chicago. I tagged along with my husband while he attended a business meeting and we extended the stay for a long weekend and celebrated the start of my birthday. When I returned my dad and I kept our annual traditon which is to share a breakfast on our birthday’s just the two of us. It’s a great time to share some “daddy daughter” time. The most important part to me is keeping up with a tradition creating many memory making moments. I have to mention an unspoken tradition I have grown to look forward to. I always receive a card from my dear brain buddies Kent and Jeanette and also John Davis. Through the years it’s always fun to see which will arrive first. I met both families because they were affected by brain tumors and now they have become cherished friendships. It’s very sweet that they remember me and I get a birthday card to help celebrate. This year two of my besties for over 30 years Lolita and Shellie were able to share a girls staycation with me. We agreed that it’s never to late to start a tradition. We have committed that even if it’s one day ” IF ONLY FOR ONE” it’s a great time to make time and celebrate our friendship. I am so greatful to my husband who gifted us girls with a nice getaway. I was able to spend a night with each one and we reflected on the years of change and growth. Funny birthday’s have a way of helping you regroup on how precious life is. A month although seems like a lot of time didn’t allow for a few more get togethers I have scheduled with my mom and several friends and not to forget my son who reminded me weekly he has been trying to celebrate my day and he didn’t forget. I won’t carry on but I want to share this. I had a conversation with my hubby and we were talking about age and time left in this life. I am the one person who most of you know does not take life for granted. I stopped for a moment and we talked about how long we have known each other and I got teary and I actually am doing it again as I type. The emotional me went down the reality road. Pretty much half my life is complete. No do overs. My kids are adults now , My parents are young but aging ( many friends have had to say good bye to theirs). I have had to say good bye to some of my young and dear family members, really weird my grandma was younger than my parents when she passed , how can that be? I know you know this but I have had to expierence the loss of so many friends. So many I have lost count. Heart breaking. Ok so reality is time is short. It seems even shorter when you are part of a community living with disease. TIME GOES SO FAST NOW!!!! My birthday seems like it was last week. My husband gently reminded me we can’t wrap our arms around time. I said DUH out of anyone I know that. Today this month July 2016 I turned 46. My husband will turn 56 in November. Silly I know this in my mind but my heart just felt the shock of HALF our life is over and what would I do without him by my side. Ok for the sake of not turning this blog into a depressing mess I think you get my point. Ok here is how I brought it down to reality and really MAKE IT COUNT MOMENTS: those crumbs that are on the counter that would aggravate me when he wouldn’t wipe them up after making something well….. I stop I really become in the moment wipe it up look at what probably aggravates him and hey! Time is short no do overs don’t waste time on the stupid stuff. This birthday I knew all this stuff but I have committed to being in the MOMENT! So many buddies have no more opportunities to be in the moment with those they love.
My family all of us are aging. DUH I know that. If we would all just be present in all we do and not focus on the next “THING” I think this world would be so different. Today the close of Birthday Month 2016 I commit to not only create memory making moments but to truly be “IN THOSE MOMENTS” Aware, Appreciating the Moments each day brings. 341 days until my birthday and counting. I am looking forward to all the moments in the days ahead.
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Tagged besties, bff, birthdaymonth, brain buddies, creating memories, friendsmatter, friendsneverend, if only for one, lanette kirk-veres, live, love, memories matter, Memory making moments, thankful
#whatwedowednesday Part of our mission is to encourage those battling brain tumors. One way we do this is after surgery Lanette personally delivers a blanket. If you don’t live locally we put together a personalized box of goodies to create a smile and send your way. Look at a donation we received to help with achieving that goal. Thank you to the Lady’s Shawl Ministry at St. Patrick Catholic Community who donated 14 shawls & blankets. If you or your organization would like to donate items to fill our boxes of cheer please contact Lanette directly by phone or email Lanette@graymattersfoundation.org